Life is all about the little moments and the little things, I share mine here in my Castle of Dreams

Month: September 2016

Where are you sweet Ellie?!!!! You left without saying goodbye!! What the heck?! This is not the way it was supposed to be!! You fought so hard, for so long, you kept your cool and kicked ALS’s arse so many times that I thought you were going to be THE ONE, the freaking one to beat it! … You deserved it, You earned it ! What the bloody hell! …. YOU DID! You know what I mean?!

I was waiting for your next stories… you said you had so much to tell us… you promised! …or did you? I thought you did… Your last post was so beautiful! It took my breath away! “The Journey Home” … what a gift you gave us! -perhaps you knew? I’m sure you knew it wasn’t this home you were talking about, that’s why you had to come back so desperately… – The post was magnificent, just like you my dear, witty, naughty, irreverent you, incomparable and unique YOU, dearest Ellie… THANK YOU! God Bless you!!!- I’m so glad you got to do that, I’m so glad you left France on a high note and I’m so glad you had that magic opportunity to reconciled with your beloved Provence… It couldn’t have been any other way! You were able to have everything you always loved and enjoyed so passionately and fiercely, in one magic place for one last time … I’m grateful you made it home to your precious Santa Barbara, I’m grateful you made it to “Merica”, that’s all you wanted!

Are you running in Gramercy Park now Ellie? Are you finally carefree, blissful, unafraid?! Are you jumping up and down, and skipping over the cracks of the sidewalk, peering into the bottom windows of the brownstones you wanted so bad to be able to afford? Are you doing all that like you said you would?! Tell me you are spinning around in circles, hair floating, arms stretched as far as possible, head in the clouds like you always had, face lifted towards the sky staring into heaven with eyes wide open … Please… let us know you are!

I wonder…. If we were really careful, and would pay really close attention, and would keep really quiet … I wonder if we would we be able to hear your laughter mixed with the wind blowing through the treetops and among the roses…

I think you are in Gramercy Park right now…I can almost see you…now you don’t need to bargain with God for five more minutes of freedom anymore my dearest and bravest Ellie, YOU GOT IT … you are finally free, unbounded and limitless…You are finally Home.

Here is one of my favorite post of yours, “Don’t Mind if I Do, Gramercy Park” one that moved and touched every fiber of my soul. I want people to read it and get to know you, I want everybody to have that joy….

I guess is time to say goodbye … but it seems I’m not able to do that just yet … I’m not ready…it’ll only have to be à bientôt for now… I LOVE YOU sweet Ellie O’Connell, and I’ll be seeing you in my dreams.

And here you are, for those of you who don’t know you, with your husband David, the French guy. Ashtonishingly beautiful !

And here You are with Gracie, Amazing Grace, like you liked to called her!

…. and here you are with mom… “Look, I can walk!” That’s what you said about this picture!! You blew my mind ! You really never lost it…. you were the coolest chick in town, and still are, your spirit keeps going on for ever ….

Don’t mind if I do, Gramercy Park…

In Manhattan, New York there is a very special park called Gramercy Park. This park is so special that it’s private and can be only accessed by those #LuckyDucks who live on Gramercy Park. And they get a key. The golden key to Gramercy Park. Be jealous, be very jealous.

But, guess what? As part of an old New York charitable holiday tradition, the gates to Gramercy Park are open to us losers on Christmas Eve! The Gramercy Park church, Parish of Calvary St.George, will also be having carolers starting at 6 PM in the park. This is absolutely not to be missed!

You may be wondering why I am so excited about this. Well, it’s hard to even write this without crying, but Gramercy Park happens to be the last place I was before, minutes before, I was diagnosed with ALS. I thought that I would let you guys in on a chapter of my book about it. I should have my book finished by March but I thought you guys would like a preview of the Gramercy Park chapter.

Here it is…

Gramercy Park

Gramercy Park on the lower East side of Manhattan has always held a special place in my heart. The name alone just sounds cool. Then there is the Gramercy Park Hotel designed in part by one of my favorite artists, Julian Schnabel, with its amazing color scheme of rosy reds, Fire King green and sapphire blues. Then there is the architecture of the brownstones around the park. A little village within a big city. And then there is the garden. The secret private garden to which only a lucky few hold the keys.

I always feel like a little part of me is still in Gramercy Park. Like a little bit of me is still wandering around the park… The part of me that doesn’t have ALS.

As I walked out of the offices of 1stdibs on my lunch break casually walking to the neurologist office for what I thought would be a quick appointment, I never imagined that this would be my last carefree walk. Physically it was not a carefree walk because I had a strange limp and I was worried that every crack in the sidewalk would cause me to fall flat on my face. Mentally, all I was thinking about was the beautiful park.

I walked past the church at the corner of the park and I remember saying to myself, “On my way back from the neurologist appointment, I need to stop at the church and check out their little thrift shop.” I was thinking that I needed to come back to the Gramercy Park Hotel for cocktails later that week with my girlfriends. I was thinking, “God, I wish I could afford one of these brownstones around the park.” My mind floated around thinking how beautiful and lush the little garden was and if the residents who held the coveted key to the garden could grow tomatoes in there.

What I was thinking about was just… Nothing. Now all I think about is… Everything. That five-minute walk in Gramercy Park was the last trace of who I used to be. That girl was like you… She had worries but they were just regular worries. Can I pay my rent this month? Is Gracie getting good grades in school? Does David love me more than his ex-wife? Why are my friends such bitches? Will I ever forgive my father? You know, regular worries. My days were normal…wake up, deal, go to bed. I walked around Gramercy Park that day with my head in the clouds and what I would give to go back to that day.

Sometimes I close my eyes and try to remember that moment in Gramercy Park before I walked into the doctor’s office. I can see it, feel it, smell it and almost taste it. I want to remind myself of who I was before and what it felt like to be carefree. I haven’t been carefree since that day. I want to cherish those few moments and have them emblazoned in my soul so I don’t ever forget what it was like… Before.

Sometimes I beg God to just let me have those few moments of liberty back. Let me just walk around the park again without knowing my fate. Let me be ignorant, let me be blissful, let me be unafraid. If I could just have back a few moments… I would run around that park smelling every flower letting myself get pricked by a rose thorn. I would pop into the hotel and grab a cappuccino. I would peer into the bottom windows of the brownstones. I would skip over the cracks of the sidewalk. I would walk down the tiny broken steps of the church thrift store and pick things up and put them down at my leisure. Hell, I might even stretch out my arms, lift my head to the clouds, start spinning around in circles and sing a little song. At the end of my allotted time, I imagine I would try to renege on my deal with God and I would ask for more time. Don’t make me go forward to my life with ALS. Let me just stay in this park without ALS. Just give me another few minutes… This time I will cherish it, I promise.

So I encourage all of you to get over to Gramercy Park on Christmas Eve…